Eating Disorder Treatment Needs To Listen To The Patients

Eating disorder treatment needs to evolve and listen to the patients!

Too many people, like myself, are leaving traditional treatment in order to recover because treatment is not providing the treatment approach that is so necessary.

Others are taking the eating disorder services offered but having to find the courage to go beyond the teachings of the treatment they are given and at times go against the advice offered in order to recover!

Eating disorder treatment is already sadly lacking in funds… that is bad enough.  It is worse that those funds are being put into treatment that is inadequate.

It feels like diet industry influence and a fatphobic culture can be all too persuasive in the treatment being given to people with eating disorders and patients who are severely malnourished.

Examples of where current treatment is failing patients:

 – Patients being given ‘weight gain / recovery meal plans’ that encourage restrictive eating.  People are told that to eat more than the plan would be wrong or ‘bingeing’ and that despite hunger above the plan they are given, that they should continue to ignore their true hunger and only follow the food quantities / types prescribed.

 – People encouraged to weigh and measure foods to check adequate portions – not just to ensure that it is enough but because they are also told, not to have too much!!

 – I hear of people advised in treatment to focus on eating ‘healthy’ foods, further reinforcing their view that foods can be ‘bad’ and certain foods should be avoided or feared.

 – Patients being told that they will not cope with eating more, they will not manage if their weight increases and not even encouraged or supported to try and just see if actually they can manage mentally (which they can with the right support!).  It seems that treatment providers are more frightened of their patient’s fear than the patient is!

 – Patients being given low ‘target weights’  – usually between a BMI of 18-20 and then being advised to reduce their dietary intake to maintain this weight that is considered ‘healthy’…  Yet we know that only a tiny percentage of the population have a natural BMI that is this low and for most, to keep their weight this low would mean restricting their diet and compulsively exercising forever more.

 – Patients forced to be exposed to their weight on the scales once a week or on a regular basis, despite the fact that seeing these numbers causes greater eating disorder symptoms for them both before and after the dreaded ‘weigh in’… The focus of treatment still continues to be on weight meaning recovered, rather than using the ‘mental state not weight’ argument.

 – Patients who have been sick for a few years, being told that they are now enduring and chronic cases and it is unlikely they will ever recover, despite the fact anyone can recover from an eating disorder, no matter the severity of their illness, despite their age or duration of their condition.

 – Patients with movement and exercise compulsions that are mentally and physically disabling them, being encouraged to continue to walk each day, to take up new forms of exercise or movement, when what they need is to stop it and rest!

I could go on….

For me, I have had a few inpatient stays in specialist eating disorder units and outpatient treatment and the outcomes were never meaningful because of all of the above.

I was weight restored to an arbitrarily low BMI each time and left treatment still with a mindset that was entirely eating disordered. 

My restrictive tendencies were reinforced by treatment, I was encouraged to keep exercising and I was not encouraged to push my weight to a level that is healthy for my body.

But, I always felt like the failure when I slid back into the illness again after treatment.

Why?

Because, when treatment does not make us better we are told we are treatment resistant… that because the treatment we are being offered is not getting us to recovery, we are incurable… 

We are told we are to face a lifetime of hunger and disability.  

And so we are left feeling as if we have failed…

And then finally, as I am doing now and so many others I know are also doing, we have to find our own path to recovery, unlearning what we have been told in treatment and by doing so more and more of us are beating our own messy path to recovery, proving experts and their approach were wrong.

But in the meantime we have lost years, decades in some cases, to an illness that robs us of so much… life opportunities and experiences we will never get the chance of now.

If treatment had been adequate at the start… what might have been for many of us, we will never know and how many lives we have lost because treatment failed them for years will be untold.

I do believe though that treatment can change.

And what is more, I am determined to see it change.

I do not believe that the professionals treating us are set on providing inadequate care.  They want their patients to succeed but they are misguided and uninformed in how to provide effective treatment to their patients.

It is my dream that some day, very soon, treatment professionals for eating disorders will start to sit up and listen to those of us with lived experience of this illness and of recovery… 

And then perhaps they will work with us to ensure the resources for treatment are spent in the right way and so really do not only change lives but save them too.

It is messed up that to recover from life threatening and disabling illnesses, we have to leave the treatment that is supposed to help us, but that is the reality for thousands of us around the world.

Things HAVE to change!

Please see my page: Changing Adult Eating Disorder Services